Down Syndrome Awareness Month

A few weeks ago, I was asked to write a piece for Maria Shriver’s website in honor of Down Syndrome Awareness Month.

Very excited to see it published today!  Hope you enjoy.



It’s Down Syndrome Awareness Month – a chance to celebrate the lives of people with Down syndrome! This is particularly important to us as our two youngest, Beau and Bitty, have an extra copy of the 21st chromosome. We like to say we won the lottery twice!

Our son, Beau (age 10), has already accomplished things that most typically developing people dream of, but never do. He’s sung with a symphony orchestra, competed in the Special Olympics and was even a featured actor in a film that recently premiered at the Sundance Film Festival. And his five year old sister, Bitty, is right on his tail – ready to carve out her own place in the world. They’re smart, compassionate, talented and loving children with hopes and dreams just like you and me. My husband, Ben, and I have hopes and dreams for them, too. Most importantly, we hope and dream that someday Beau and Bitty will be more accepted, included and valued in our society.

Advocating for people with intellectual and developmental disabilities (IDD) has become our mission in life, but it hasn’t always been that way. In the beginning, when Beau was born, it was all we could do to keep our heads above water. We worried about his health, his future and his happiness. As the new parents of a child with special needs, we learned everything we could about Down syndrome. Within the first few days of Beau’s life, we were introduced to a poem, “Welcome to Holland” by Emily Kingsley. The poem compares the experience of having a child with special needs to the idea of a couple preparing to take a trip to Italy, only to find their plane has instead landed in Holland. For years this poem has been a “go to” for me in times when I’ve felt alone. It illustrates that while Holland is slower paced, it has many wonderful offerings such as windmills, tulips and Rembrandts. And it addresses the idea that while everyone else is coming and going from Italy and bragging about the wonderful time they’ve had there, Holland has much to offer, too. Going to Holland is just going to a different place – or is it?

There are plenty of moments in my life when I experience the beauty and wonder of Holland.They happen every time I look at Beau and Bitty. But the reality is we don’t live in Holland. We live in Italy. And in Italy, a person’s worth is measured differently. It’s measured by performance and productivity. It’s measured by accolades and achievements. And sadly, a large percentage of Italy chooses not to include and accept people from Holland.

But there’s good news! There’s a revolution taking place right now in Italy – a revolution to set aside what we think we know and learn that we are all more alike than different. This revolution gives me great hope that someday when a child with IDD is born there will be no need to introduce parents to the “Welcome to Holland” poem, because Italy will have written its own.

Here are 5 ways you can join the revolution:

1. Create a more inclusive workplace by hiring people with IDD.
2. Eliminate the use of the “R word.”
3. Continue to pass legislation that allows people with IDD to plan for their futures.
4. Improve educational opportunities for people with IDD.
5. Incorporate people with IDD into mainstream media.

Here’s the link to the article published on Maria Shriver’s website


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